I took prednisone at high doses for a year. I added 20 lbs during that time -- not terrible as I already was a big person. I probably would have added more except for another problem with prednisone -- raising my blood sugar to the almost diabetic level (or higher sometimes).

I wanted to take prednisone as it was the fasted, cheapest, and least inconvenient treatment to get MG under control according to my neuro (no hospital stays, no ongoing blood tests...). My neuro wanted me to take 20mg per day and slowly get control and I had decided 60mg (from my reading) would be much faster. She worried greatly that I would be pushed into type 2 diabetes and be on diabetic treatment the rest of my life if I took the higher dose.

I wanted to take high doses to rush MG control (my wife was starting cancer treatment and I needed to be her driver, care giver etc.). My neuro suggested I pretend I was diabetic and eat that kind of diet so my blood sugar would stay under 100 or so and test it each morning fasting.

The motivation of my wife's cancer kept me on the low sugar, low carbo diet which did, I think, limit my weight gain. So my suggestion is think about about that kind of diet -- as prednisone will push many of us into diabetes long term anyway and maybe we can stave it off as I did.

As to the non-physical side of prednisone -- the mood swings and such, I tried to become somewhat detached from my emotions. Sort of pretending that I was looking at myself as an outside observer and watching my emotions or lack of them and exercising control from the outside. I also tried to keep a sense of humor. Understanding that one is likely to have mood swings and recognizing them as they happen can be learned and that goes part way into exercising control over them -- you still have them but understand that it is not really you but the prednisone version of you. All the time you remind yourself that you aren't going to be on high dose prednisone forever, and things will change back for the better soon. And you also tell yourself -- it is just a bunch of chemicals out of whack in my brain doing it to me.

One of my symptoms was that for a few months life seemed almost flat -- no emotions at all. I wrote about it in my blog that I include below -- from a few years ago.

My own condition is pretty fair physically and rather strange mentally. I take large daily doses of prednisone to keep my immune system from producing antibodies that attack my nerve-muscle connection and make me weak. It works pretty good and I am mostly functional physically. However, my mind has gone wonky. I have developed anhedonia (this is a self-diagnosis at the moment--have to try it on my doctor next week).

For those of you for whom anhedonia doesn't ring a bell, -- hedon is a root word from the Greek meaning pleasure. Anhedonia means "without pleasure." Prednisone has this side effect in some small number of addicts-- it takes away the feelings of pleasure that are part of a normal life.

The technical explanation: when we anticipate doing something we like. when we do something we like, and when we complete doing something we like to do, we get a feeling of pleasure. This actually comes from our brain releasing dopamine into itself. When something stops this, we lose our enjoyment in doing things--just a bucketload of chemicals being dumped underlying it all. This includes not only our hobbies, our jobs, but eating, sex, exercise or whatever gave us pleasure turns into just a flat non-emotional, non-enjoyable dullness.

Anhedonia is found as a side effect of some medications, is present in some folks with depression and some folks with schizophrenia, and can be found in former drug addicts. Many abused drugs give their high by bathing the brain in dopamine (i.e. oxycodone/oxycontin pain killers gave me euphoria when I took them after knee surgery) turning on the pleasure response artificially). However, too much of that can burn out the pleasure areas that dump the dopamine. Prednisone, in some folks, seems to limit the amount of dopamine produced in the pleasure part of the brain--leading to lack of motivation and enjoyment until you quit taking it Prednisone can cause other mental problems including confusion, irritation, mood swings, and so on, so folks taking prednisone may think they have strange mental conditions that are really just part of a mental confusion produced.

My regular doctor, when I complained that I didn't have any motivation nor enjoyment to do anything, said I was surely depressed and stressed, with Margo and me both having health problems, and I needed to go on depression meds or seek counseling. As I am not in the least bit sad, or down, just unbelievably lethargic, I disagreed and went to Dr. Google. Depression without sadness search led me to pages describing anhedonia--which, I thought, pretty much fit my condition, and gave me an explanation that prednisone probably was the culprit.

There are alternatives to prednisone for keeping the immune system running on low. So my next step is to switch to one of those as a trial--none work for everyone and some have even harsher side effects. The process of getting unhooked from prednisone is several months -- it shuts down the adrenal glands and you have to gradually bring them back to life--and the alternative medicines take 3-6 months to take effect. So, somewhere in March I will being trying to switch over with the goal autumn to be addicted to something else and have the thrill and agony of discovering a whole new set of side effects.

In the meantime, if I seem to be quite lazy and accomplish little, I would hope you blame the prednisone rather than me. Although I can force myself to do something because it is my duty, it is surely not as motivating as enjoying it. That is why I haven't been writing much for the past few months and in fact barely doing anything other than what I must do.

To give you an idea of what this is like, think of what it would be like if sex was always just a duty like shoveling the sidewalk. I suppose I could be a good Catholic anyway!

I call my condition "Spockification." I have the cold, logical, unemotional, unjoyful pure rationalism of Mr. Spock from the Star Trek series. I am in the tapering down process with prednisone, and I noticed I got irritated with a dodging and weaving driver yesterday while driving through the snowstorm to Margo's appointment--a good sign that some emotion is stirring again. Now if ice cream started giving me pleasure again....

Thanks, Rhanson. Can you pls send me the link to your blog?

Hi Sbr. sorry to hear your troubles, mg is not a easy disease to deal with, butyou can learn to control it with your meds, and a total change of lifestyle, your foods intake have to change drastically, your excersises have to taper down as mg progression will force to do, the best exersises for mr, are the ones that require no physical exertion, walking 45 minutes daily slow to brisk, swimming, yoga,small hand weights with no exertion. and the most important, DO NOT STRESS as stress is the worst ennemy of mg
as forthe prednisone, it is the least to cause you problem, their is a misconceprtion about it, you need to learn to deal with your meds, you supose to use them to reduce and control your mg, every body is different, but the process is the same, predisone as a corticoid steroid, give your body in a dose of 5mgs every other day(minimun to be taken) give you the needed cortisol that you body require, and let me explain what we take for granted, this is a disease that as been in the books for over 400 years, to wich we have been our own practitioners, doctors, guinea pigs, we owned and we have to do the best to control it so we can live a pety n"normal life"

Thank you , Fihghter!

Hi sbr,

I can understand the problems that you are facing because of the symptoms of MG. The symptoms of this disease are as complicated as its name :)

I have been fighting MG since the age of 13 along with other diseases that occured during my fight with MG (Lichen planus, Peroneal neuropathy and chronic urticaria). Last year when i was 22, i finally got medicines that seem to work well.

Before this disease caused speech problems, i was a good singer. But when i started stammering and walking in an abnormal manner, people used to laugh at me.

But this didn't let me down. My medicines are helping me now and practice has helped to improve the quality of my speech. Recently i was selected to represent my institute in a public speaking event. This wouldn't have been possible if i would have considered myself a failure. If i would have considered myself a failure due to my reading disability, i wouldn't have been able to study and complete M.Tech.

While taking steroids we do experience symptoms like depression, anxiety and social withdrawal apart from type2 diabetes, bloating and weight gain. But one must try and remain positive during this time. Meditation helps a lot. Also if you like animals, spending time with a pet really helps in relieving stress.

Having a good sense of humour is extremely important while fighting this disease as stress worsens the symptoms of MG. I used to personify MG and would joke about the symptoms rather than crying and blaming the symptoms.

Also...if you are gaining weight, avoid too sugary (pastries, candies, etc), oily (deep fried food) and fatty food. Eat plenty of veggies and fruits rich in antioxidants.

DO NOT CONSIDER YOURSELF A FAILURE, BUT A FIGHTER WHO WILL SOON DEFEAT THIS DISEASE.

BE POSITIVE AND HAPPY :)

Best,
AV.

SBR my blog is at http://riverroadrambler.blogspot.com/ As most of my MG stuff was back in 2012-2013 you might search it for MG if you are interested in that. I mostly BS about retirement and my return to the farm I grew up on in NW Wisconsin. My own situation is rather rare in MG circles -- I got it, had it bad, spent year on meds and then was one of the luck 15% who go into remissions for various periods of time. I am in remission now and hopeful it won't come back. I vowed that, unlike most folks who get MG and get it under control and their life back and leave this forum wanting to forget the initial problems, I would stay around here offering advice to new folks. My general advice is to get an experienced neuro, read everything you can find on reputable sites, become a knowledgeable partner in your treatment, and never give up as most folks figure out what works for them and go on to do well with ongoing treatment. The first year is usually the most difficult as we figure out what works for us.

Good Luck Russ

The blog search for myasthenia can be seen by entering this line into your google search entry- a google website search for the word "myasthenia" at the site riverroadrambler.blogspot.com

Myasthenia site:riverroadrambler.blogspot.com

Thank you, AV., for your advice and your kind words.

I'm still trying to put it all into perspective, but it's too fresh, I suppose. Everyone who's replied to my post appears to be a veteran with years of struggle behind them. I'm new at this, at mg as well as writing and talking about myself. Feel a little sorry for myself, to be honest. I'm afraid it will get worse. I'm afraid I'll lose my job, my house, my self-respect. And I have no idea how to address it. All my life I've been known for physical and mental strength, and now I'm weak. Coincidence or perhaps my body informing me that I've ignored all the earlier signs to slow down, to take better care of myself? I can't shake the feeling that I am responsible somehow.

Thanks again to all of you for taking the time to reply. I'll come back to these messages whenever I feel especially down.